Posted by MERM on 8/12/2008, 2:28 pm
people say to you, 'Hey, shape up! Stop thinking only about your troubles. What's to be de pressed about? Go swimming or play tennis and you'll feel a lot bet ter. Pull up your socks!' And how you, hearing this, would like noth ing more than to remove one of those socks and choke them to death with it."
Dick Cavett in a New York Times essay on depression
There must be times when those with fibromyalgia wish they had some other illness -- one with clear symptoms, patented treatments and a sure cure. It would be understandable, given that fibromyalgia often goes unrecognized and commands little respect. It's doubly irritating to feel bad while others react with skepticism.
Fibromyalgia patients can look fine, yet feel terrible -- but too often the world can't seem to deal with such "invisible disorders." It's easier when a patient looks as sick as she feels.
What is this fibromyalgia syndrome that too often seems to at tract the attention of those who are "compassion-challenged?" "Fibro" refers to fibrous tissue, such as tendons and ligaments; "my," to muscle; and "algia" means pain. The result is "a form of soft-tissue rheumatism," as one source has it. At least 2 percent of the general population is estimated to have it.
After other illnesses with similar symptoms are ruled out, that can leave fibromyalgia, which is frequently paired with another condition -- chronic fatigue syndrome (CFS). About 70 percent of those diagnosed with fibro myalgia also meet diagnostic cri teria for CFS.
Fibromyalgia is estimated to affect about 10 million Americans. It can take an average of five years for an accurate diagnosis because patients may opt to consult a range of medical specialists beyond primary care physicians -- rheumatologists, neurologists, psychiatrists and pain specialists, among others -- and their symptoms can wax and wane besides being individualized. Called "the most common chronic widespread-pain condi tion in the United States," fibro myalgia's cause and cure are both essentially unknown. Although it affects both sexes and all ethnic groups, women make up 80 to 90 percent of those diagnosed.
Increasingly, fibromyalgia can be managed in ways that improve quality of life for those with the diagnosis. Individualized therapies, such as exercise, nutrition and relaxation techniques, are one route. Emotional support and drug therapy, as well as various combinations, are others.
'Every age susceptible'
Dr. Robert Silverbrook, an internist practicing in Mercerville since 1990, says all but two of his approximately 50 patients with fi bromyalgia are women, ranging in age from 40 to 55. (Unsurprised by the high percentage of women, he points out that, overall, women outnumber men as patients -- they're better historians and they're willing to talk about how they feel, he observes.) Fibromyal gia used to be more confined to adults, he says, but now, "every age is susceptible." That's why "the earlier the diagnosis, the better," he says, before the disease can become chronic. He prescribes Lyrica, FDA-approved last year for fibro myalgia, for some of his patients, working with them to build up to the dosage needed.
"Unless you decrease pain in those trigger points," Silverbrook says, "those people don't even want to get out of bed." With the right meds -- whether Lyrica, antidepressants or pain medication -- they can get into exercising and get their minds off their illness. "The more you think about something, the more you may hurt," he adds.
He also advises yoga and mas sage therapy. Once a disease state or syndrome has its own diagnostic criteria, it's regarded with more respect, Silverbrook says, citing the criteria devised by the American College of Rheumatology for fibro myalgia. For instance, 20 years ago, bipolar disease was looked at with skepticism, he says.
Silverbrook refers to "a diagnosis of exclusion" to help arrive at fi bromyalgia: thyroid, arthritis and depression are all ruled out before a patient's medical history and the doctor's measured pressure on the trigger points can point to it. As for conditions that may cause symptoms to worsen, he says stress is by far the biggest one, with weather and barometric changes also playing a part.
Silverbrook attended a fibro myalgia awareness event in Tren ton in May, meeting Beth Warren, a fibromyalgia patient, for the first time and speaking on the same panel with her and her mother.
Living with fibromyalgia
Beth Warren of Pennington was diagnosed with fibromyalgia in 1996 when she was just 13. Doctors have since theorized she was probably sick from early childhood, and "developed coping mechanisms" for what she had. Her earlier muscle and joint pains had been written off as "growing pains." Warren remembers not sleeping well; she also had night sweats and difficulty concen trating. She was prey to frequent infections, she says, with her ears causing her particular problems. In retrospect, she believes the sur geon who took out her tonsils should also have removed her ade noids. They proved to be "so in fected they were pressing on my Eustachian tube and causing ear pain," she remembers.
Warren believes the surgery for her adenoids "jump-started the fi bromyalgia" she still suffers from today. The "bad chest pain" she experienced after surgery forced her to stay in bed. She was home- bound for a year (at first her condi tion was thought to be "school phobia"), then bedridden. All told, she missed eighth grade and all of high school, with home-tutoring provided by the school district. She also missed the traditional high school activities and social life, of course.
Warren also has been diagnosed with chronic fatigue syndrome; it shares many of the same symptoms as fibromyalgia, she says, and may be the reason why her at tempts at exercise often cause her symptoms to worsen. Except for walks with Zoe, her boxer pup, she avoids such triggers.
Summer heat is another variable she knows exacerbates her condition. A few years ago she had to give up on a summer-abroad program, leaving France after a week because settings with air-condi tioning were so rare.
Day to day, Warren's active symptoms include insomnia, fatigue, low stamina; pain, typically in her chest and legs; trouble concentrating and short-term memory loss. Because of the side effects with other medications she tried, she now takes pain medicine three or four times a day. Once a week, she administers to herself an hourlong subcutaneous injection of gamma globulin to strengthen her immune system.
After a year at Chestnut Hill College, where she found accom modations for her condition insufficient, she transferred to The College of New Jersey, majoring in psychology. She graduated in 2005. Warren recently finished a few science courses at Rider University in preparation for the med school test. She wants to be doctor, but notes the irony that "The thing that makes me want to be a doctor may be what keeps me from doing it."
Support from others with the same diseases helps a lot, Warren says. Among acquaintances and family members, reactions to her condition have been "mixed," partly because she doesn't look sick so there's doubt she really is. Family friends have suggested that she just needs more exercise. She used to do online outreach, Warren says, and she once spoke about fi bromyalgia at the New Jersey Teachers Convention in Atlantic City. For a while, her mother, Laura -- who oversaw her childhood treatment -- served on the board of the New Jersey Chronic Fatigue Syndrome Association. A few months ago, both Warrens spoke at the event in Trenton designating May as "Fibromyalgia Awareness Month in New Jersey."
Yet, for those who have the disease, every month is fibromyalgia month.
Information about fibromyalgia is available from the National Fibro myalgia Association
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